IBD Registry

The Colon and Rectal Surgery Division's research laboratory group is actively investigating inflammatory bowel disease (IBD), a chronic inflammatory condition that affects the intestines. IBD can result in abdominal pain, diarrhea, anemia, and malnutrition. The two main types of IBD are ulcerative colitis and Crohn's disease. There is currently no cure for IBD and its cause remains unknown. IBD often affects several members of the same family, suggesting it may have a hereditary component. A core effort of our research is to enroll patients for the purpose of investigating the genetic basis for IBD.

Current IBD Registry Studies:

A Proposal for the Creation of an Inflammatory Bowel Disease Registry (IRB HY98-057-EP)

The Division of Colon and Rectal Surgery's Familial IBD Biobank was created in 1998 for the extensive investigation of the genetic factors contributing to the pathophysiology of IBD patients through DNA, tissue and serum translational studies. Since its creation, the Biobank has expanded to include over 1800 patients with IBD and their family members as well as control patients who have generously donated their blood, tissue and/or serum. Control patients are healthy volunteers and patients with other colorectal pathologies including colorectal cancer, familial adenomatous polyposis (FAP), hereditary non polyposis colorectal cancer (CRC), dysmotility, diverticular disease and clostridium difficile.

The Carlino fund for IBD research at the Milton S. Hershey Medical Center

Recruitment:

We seek IBD patients and their family members for enrollment in our registry to increase the understanding of IBD and what factors influence the course of IBD over time. Discovery of the causes of IBD will allow our scientists to find better ways to treat and perhaps one day prevent IBD. No personal identifying information will be associated with your sample. We are fully compliant with the federal Health Insurance Portability and Accountability Act (HIPAA) regulations.

Requirements:

A quality-of-life questionnaire along with medical record information will be placed into the research registry for each participant. We will ask you to provide us a blood sample so that we can try to identify genetic factors that play a role in IBD.

Benefits:

There is no promise of personal benefit if you choose to participate in the study. The results of this study will provide information about the genetic factors that contribute to the development of IBD. As a result, this information may lead to better ways to diagnose and treat IBD.

Contact:

If you have inflammatory bowel disease and would like to participate in the familial inflammatory bowel disease registry at Penn State Milton S. Hershey Medical Center, please contact: HersheyIBD@hmc.psu.edu.

The Pediatric Inflammatory Bowel Disease Collaborative Research Group Registry

The Pediatric Inflammatory Bowel Disease Collaborative Research Group Registry comprises over 20 pediatric gastroenterology centers throughout the United States and Canada, including Penn State Children's Hospital. There have been over 1900 IBD patients enrolled since 2002. Participants are eligible for this registry if they have been diagnosed at 16 years of age or younger. Data is collected at diagnosis, 30 days post-diagnosis, and then every three months. Enrollment in this registry does not affect the management of each patient's inflammatory bowel disease. There have been over 19 peer reviewed publications by this registry on topics including infliximab (Remicade) effectiveness in pediatric Crohn's disease and pediatric ulcerative colitis, and risk of surgery in pediatric Crohn's disease.